Respite Facts and Talking Points

Understanding the Contributions of Family Caregivers of Adults

Million
Family caregivers of adults in the US
Billion
Hours of unpaid care are given each year
$ Billion
Estimated economic value of their unpaid contributions per year

Source: Susan C. Reinhard, Selena Caldera, Ari Houser, and Rita Choula, Valuing the Invaluable: 2023 Update - Strengthening Support for Family Caregivers, AARP Public Policy Institute. Download Infographic.

Understanding the Contributions of Family Caregivers of Children

Million
Family caregivers of children with special health care needs in the US
$ Billion
Estimated economic value of their unpaid care per year
$ Billion
Associated foregone earnings ($3200 per child per year)

Source: John A. Romley, Aakash K. Shah, Paul J. Chung, Marc N. Elliott, Katherine D. Vestal, Mark A. Schuster, Family-Provided Health Care for Children With Special Health Care Needs, Pediatrics, December 2016

Understanding the Respite Needs of Family Caregivers

Million
Family caregivers of children and adults in the US
%
of family caregivers of adults receive no respite
%
of family caregivers of children have unmet needs for respite.

Sources:

National Alliance for Caregiving and AARP Public Policy Institute, Caregiving in the U.S. 2020.

Kalman Rupp, Paul S. Davies, Chad Newcomb, Howard Iams, Carrie Becker, Shanti Mulpuru, Stephen Ressler, Kathleen Romig, and Baylor Miller (2005/2006), A Profile of Children with Disabilities Receiving SSI: Highlights from the National Survey of SSI Children and Families, Social Security Bulletin, Vol 66, No.2.

Family Caregivers by State

State-by-State Table with Number of Family Caregivers, Hours, and Economic Value of Caregiving, 2021. Source: AARP Public Policy Institute, 2023.

Caregiving for Family and Friends — A Public Health Issue, National Association of Chronic Disease Directors, Centers for Disease Control and Prevention - Caregiving Data from the 2015-2017 Combined National Data from the Behavioral Risk Factor Surveillance System (BRFSS). Includes state data on caregivers.

Respite Saves Money

Researchers at the University of Pennsylvania studied the records of over 28,000 children with autism ages 5 to 21 who were enrolled in Medicaid in 2004.  They concluded that for every $1,000 states spent on respite services in the previous 60 days, there was an 8 percent drop in the odds of hospitalization.

Source:  David S. Mandell, ScD; Ming Xie, MS; Knashawn H. Morales, ScD; Lindsay Lawer, MA; Megan McCarthy, MA; Steven C. Marcus, PhD. The Interplay of Outpatient Services and Psychiatric Hospitalization Among Medicaid-Enrolled Children With Autism Spectrum Disorders. Arch Pediatr Adolesc Med. 2012; 166(1):68-73.   Full Article

READ MORE in the National Respite Coalition's Cost-Savings and Benefits Due to Respite Fact Sheet

Respite Works

Outcome Evaluation of the National Family Caregiver Support Program

The Administration for Community Living (ACL) released the Outcome Evaluation of the National Family Caregiver Support Program (NFCSP) on December 6, 2018.

Key Respite Findings
One key finding regarding respite was that, on average, NFCSP caregivers who received 4 or more hours of respite care per week had a decrease in self-reported burden over time, while the comparison caregivers experienced an increase in self-reported burden.

In addition, among caregivers who used NFCSP respite care, as the respite hours per week increased, so did the probability of a more favorable response regarding caregivers' perception that services helped them continue caregiving.

Senior Companion Caregiver Study

The Corporation for National and Community Service conducted the Senior Companion caregiver study to establish the impact of respite services on caregivers of Senior Companion clients. The study surveyed caregivers prior to the start of respite care and at a one-year follow-up point. Caregivers were grouped into critical, essential, and moderate categories based on personal and family needs. Those in the critical-needs group were the ones with the highest needs.

  • Nearly 76% of caregivers in the critical-needs group reported Senior Companion respite services helped them “a lot” with both personal time and household management.
  • Approximately 60% of caregivers with critical needs reported that Senior Companion services helped them “a lot” or a “great deal” and allowed them to be more involved in social activities and enjoy time with their friends or relatives.
  • Approximately 40% of caregivers who rated their health as fair or poor before respite support, now rate their health as good.

Source: Corporation for National and Community Service. Health Benefits of Senior Corps. Read the brief.

Respite May Reduce Child Abuse and Neglect

Read the Brief from the FRIENDS National Center for Community-based Child Abuse Prevention and the Alabama Department of Child Abuse and Neglect Prevention

Through Community-Based Child Abuse Prevention (CBCAP) funding awarded by Alabama Department of Child Abuse and Neglect Prevention (ADCANP), United Cerebral Palsy (UCP) of Alabama’s affiliates enabled 1,673 families to take short breaks from the 24/7 demands of caring for children with special needs and medical conditions.  Results of an external evaluation conducted by Auburn University found that among families using the respite services:

%
reported reduced stress, indicating increased resilience—the flexibility and strength to spring back from adversity
%
reported an increase in Knowledge of Parenting and Child Development — accurate information about raising children and appropriate expectations for their behaviors
%
reported an increase in their social connections. Research has shown that parents who are isolated and have few social connections are at higher risk for child maltreatment
%
reported an increase in Concrete Supports in Times of Need, connecting families with needed services and ensuring basic needs, such as food, clothing, and shelter, are met

Potential Costs vs. Investment in Prevention

$
Average taxypayer cost in Alabama per child who is abused or neglected
$
Average cost of prevention programming per adult participant

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